Milan, Ill. (KWQC) — Johnna Kerres is a new mom, “Your life kind of changes in that moment.”

Kerres feels the way a lot of first time moms feel. Tired. “From day one, there wasn’t much sleep,” Kerres said. “He likes to be awake at night.” But that’s okay. At 6 pounds, 7 ounces, baby Everett is the bundle of joy the Kerres couple had been waiting a long time for.

“We had been trying to get pregnant for close to a year.”

An important milestone in any pregnancy, Kerres and her husband were planning to find out the sex of their baby.

“We decided at that ultrasound if we wanted to know if he was a boy or a girl.” They were overjoyed, hearing the words: It’s a boy. “We were crying, so excited, because we both really wanted to have a boy,” Kerres said. “Then they came back in and you could tell something was wrong because of the doctor’s face.”

It was a bittersweet announcement. Doctors told the couple there was a problem with their baby.

“It was a tough moment because here we were so excited and happy and we got this crushing news that our baby had a birth defect.” It’s called spina bifida and the severity of the defect varies.

“It happens the 28th day of conception,” Kerres explained. “So, it happens sometimes before you even know that you’re pregnant.” Typical with more severe forms of spina bifida, the spinal cord protrudes out of a baby’s lower back, it’s exposed.

“Normally the brain and spinal cord separate from the part of the body that’s going to become the skin,” said Dr. William Whitehead, Pediatric Neurosurgeon, Texas Children’s Hospital. “If that separation doesn’t go correctly you can get spina bifida.” Because of damage to the nerves, children born with spina bifida can suffer from paralysis. It’s common for children affected to have bowel and bladder issues, as well. Many babies born with the defect need a shunt to drain fluid from the brain.

Kerres said the initial diagnosis was grim, “The way it was presented was that maybe we shouldn’t move forward with our pregnancy, either, which was devastating.” But he was the baby boy they’d been praying for. So, the couple did their research and found out about a new surgical trial far from home, at Texas Children’s Hospital.

“The first thing I would say is have hope,” said Dr. Michael Belfort, Chief OB/GYN, Texas Children’s Hospital. “It’s usually a devastating diagnosis. The first time someone starts talking to a patient who has just been given terrible news, they are not hearing what your saying and often they are focusing on the worse things.”

Once the shock wore off, Kerres realized they had options. “To see where technology is now and what is available, I think it’s important for people to be aware of that.”

Packing their bags, Kerres and her husband moved south to take part in a cutting-edge trial that could help their son. “The in-utero surgery, for us, was a chance to hopefully give him a better outcome.” There’s a very small window of time. The surgery has to be done within 24 and 26 weeks of pregnancy. “They do the repair on their back while they’re in the womb,” Kerres explained.

This new surgery is meant to help the baby but it’s supposed to be a lot safer for mom, too.

“Instead of making an incision in your uterus, they go in and make pinky-sized cuts and put ports in,” Kerres explained. “They go in with scopes to do the repair on his back.” It’s called fetoscopic surgery, performed while the baby is still developing.

“We were surgery 19,” Kerres said.

At 24 weeks inside the womb, doctors dropped Everett’s spinal cord back into his spinal column and covered it. It was a successful surgery on a tiny baby, still the size of a pop can. Medical teams from Barcelona, France, Johns Hopkins and Stanford were in attendance, watching the surgery — “Because they want to learn this technique and they want to start doing it,” Kerres said.

Doctors with TCH want to make this surgical advancement the new standard of care.

“The short term results, the scans we do about six weeks after surgery and how the baby looks when they are born, are very encouraging,” said Dr. Whitehead. But they have a long way to go.

“Results are early,” Dr. Belfort explained. “We have only got three patients that are beyond a year old.”

Closely monitored for the rest of her pregnancy, Kerres gave birth to her son, Everett, on September 20.

“He just shifted his eyes… and looked right at me,” Kerres said. “It’s the best feeling. Especially after everything that we went through to get there.” And baby Everett is conquering milestones already. The slightest wiggle of his toes means the world to his parents.

“You know, they said that he would never walk. He’s got full leg movement, he wiggles all his toes and he kicks like crazy.” Everett may have trouble walking in the future, he may not. “It’s not a guarantee. There are kids that have the surgery that still are in wheelchairs.”

But for now?

“He’s an awesome baby,” said Kerres.

Roughly 80 percent of babies born with the spina bifida birth defect need brain surgery for a shunt. But this new surgical technique has cut that number in half.
So far, Everett has shown no symptoms of needing a shunt. As part of the study, his progress will be monitored for the rest of his life.